Be heard in 2007
There are a staggering 300 Aids charities in the UK; some small, some large
some effective, some less so.
Yet, despite this plethora of organisations, many of the 60,000 plus people
living with HIV today still feel isolated, voiceless and powerless to influence
the services and policies that affect their lives.
In 2007, UKC and its partners Positively Women and the Long-Term Survivors
Group and other organisations aim to tackle this powerlessness by engaging
positive people on an unprecedented scale.
Through a unique nationwide conferencing event called What Are We Doing? they
want to bring together thousands of people living with HIV across the UK through
regional events, online conferencing and a central conference in September
2007. It will be a superb opportunity to share ideas, learn more about HIV
at work, drug treatments and acquire skills to get the most out of your NHS
and other services.
But rather than second guess what you want to talk about, UKC is asking all
PN readers to complete a survey in this month’s magazine. This is your
chance to let us know what you want on the agenda. What are your top concerns?
What is life like for you? What do you want to change?
Please take the time to complete this questionnaire and send it back to us
– it will make your voice stronger and louder and will make a difference.
Testing times
A colleague recently told me how a Rwandan HIV clinic was turning around CD4
and viral load test results overnight.
This colleague was particularly impressed because his own London HIV clinic
takes at least two weeks to turn around his blood test results because the
hospital had ‘outsourced’ testing to a lab in France.
This puts the NHS in the odd position of having an HIV service that, for once,
lags far behind a counterpart in a poor African country that, not so very
long ago, was torn apart by bloody civil war.
My colleague was further surprised when his HIV doctor asked if he would be
happy to get his test results by email in future, as this would mean he would
only need to see his consultant once a year. And did he also want to become
a ‘peer patient’; someone who trained other less confident patients
to understand their results without the help of a doctor.
While it’s obviously fantastic news that some people living with HIV
are doing so well they rarely need to see their doctor, there is still something
slightly uncomfortable about the relentless push for ‘remote’
medicine in the NHS. We know the NHS is struggling with cut backs and that
every part has to carry its share, but you sometimes have to ask whether some
cost savings are a cut too far.
Amanda Elliot, managing editor
